TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Injury Radio Network’

Caregivers SPEAK OUT! . . . . Malissa Mallett (caregiver for her son)

Caregivers SPEAK OUT!

Malissa Mallett (caregiver for her son)

presented by

Donna O’Donnell Figurski

“Malissa Mallett will be my guest tomorrow (Sunday, February 17) on my radio show (Another Fork in the Road) on the Brain Injury Radio Network. She has been caregiver for her son, who had an anoxic brain injury, since 1997, when he was an infant. Malissa is Program Director for the Brain Injury Alliance of Arizona (BIAAZ). We will discuss caring for her son and the effect of her expertise (opioid use on the brain.) My show broadcasts live at 5:30 PT (blogtalkradio.com/braininjuryradio), or it can be heard as a podcast anytime (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).”

Malissa Mallett

1. What is your name? (last name optional)

Malissa Mallett

2. Where do you live? (city and/or state and/or country) Email? (optional)

Laveen, Arizona, USA     Program@biaaz.org

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

The survivor is my son. He was 2 months old. His brain injury was caused by aspiration, causing him to stop breathing (anoxic brain injury).

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

My care began in April 1997. I was 22 years old. I was my son’s main caregiver then, but I’m not now.

th

Babies get brain injury too

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I had just returned to work after giving birth. I was not able to continue working, since my son required 24-hour supervision for his heart and lung monitor.

7. Did you have any help? If so, what kind and for how long?

Occasionally. My family, who were trained in CPR, would care for my son to give me a break or a night out.

cartoon-hospital8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

In the hospital

9. Was your survivor in a coma? If so, what did you do during that time?

No

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

No

11. What problems or disabilities of your brain-injury survivor required your care, if any?

This is difficult to answer given my son’s age at the time of his brain injury.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life was challenging all throughout my son’s life.

13. What do you miss the most from pre-brain-injury life?

I will never know what could have been.

14. What do you enjoy most in post-brain-injury life?

Does not apply

15. What do you like least about brain injury?

shakilaramanwordpresscom

Learn about brain injury

The lack of understanding in the community

16. Has anything helped you to accept your survivor’s brain injury?

Yes. Education.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes, it has. We can discuss this on your radio show. It’s too much to explain here.

18. Has your social life been altered or changed and, if so, how?

Not anymore

19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love for my son to be successful and independent.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

supportTake care of yourself.

Be surrounded by supportive people.

Educate yourself.

 

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Past Blast: Mansion Dancing Under the Stars

“TBI Tales: Mansion Dancing Under the Stars”

(originally published April 26, 2014)

presented by

Donna O’Donnell Figurski

mansion-at-westport

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.dance under stars

anim0014-1_e0-1As I say after each post:

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(Clip Art compliments of Bing.)

(Photos compliments of ME.)

If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company.  Here are pre-order links for Amazon, Barnes & Noble, and IndieBound.

Excerpt 6

Chapter 15

Emotional Roller-coaster

presented by

Donna O’Donnell Figurski

nurse-clipart-2645bff0709e4cf23bcaff6690965816-1… A few days later, on January 26th, David gave his night nurse a scare, which in turn frightened me. When David’s night nurse Melody checked on David in the middle of the night, she found him sitting up in bed. That’s not so scary, except that David had no control over his body. He was unable to move, and his muscles were slack, but somehow he had found the bed controls that raise and lower the sick-clipart-sick-person-12mattress and fiddled with them enough to bring his upper mattress to a dangerously high, perpendicular position. He was seated precariously upright—nearly flopping over like a Raggedy Andy doll.

When Melody, whom I absolutely adored, told me of the incident the next morning, I detected a barely perceptible grin on David’s face. He had enjoyed his unwitting prank …

 

Please leave a comment/question. I will respond.

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SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Lisa Parker

 

Lisa Parker (survivor) … I went to Al-Anon with my mom last night, and it was gr8!

FocusGroup-ridgetopvirtualsolutions

 

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.anim0014-1_e0-1

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

 

Carol1. What is your name? (last name optional)

Carol

2. Where do you live? (city and/or state and/or country) Email? (optional)

Toronto, Ontario, Canada

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.th

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes. I was working full-time, but I resigned after the accident.

7. Did you have any help? If so, what kind and for how long?

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

9. Was your survivor in a coma? If so, what did you do during that time?

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.e799afda1f4dee4bd0c8c6e0606325b1

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

13. What do you miss the most from pre-brain-injury life?hotel-clipart-transparent-background-4.png

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

14. What do you enjoy most in post-brain-injury life?

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

16. Has anything helped you to accept your survivor’s brain injury?

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”No Excuses

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

18. Has your social life been altered or changed and, if so, how?

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

volunteers19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to volunteer and help other people.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it (intact) with your enemies. I don’t care!

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TBI Tales . . . . . . . . . . . . . . . Knitting through the Honeymoon

Knitting through the Honeymoon

by Liza Spears

presented

by

Donna O’Donnell Figurski

 

bride-and-groom-clipart-14I’ve been married for almost seven months. Since my wedding, I’ve knit twenty-five hats, five sweaters, three scarves, and one blanket.

I started my first “married life” knitting project on the third day of my honeymoon. It was a ribbed seed stitch hat in my wedding colors–deep reds and purples. I pretended that it was for my husband, even though I knew there was way no he’d wear such a feminine pattern.Liza Spears Wedding Photo

I started the hat over more times than I can count. I didn’t start over because of any mistakes–I hadn’t dropped a stitch or miscounted any rows. The pattern wasn’t complex. I just knew each time I finished that it wasn’t quite right. Every time I got to the last row of the hat, I’d finish as instructed–threading the yarn through the remaining stitches and pulling it tight. Instead of weaving in the ends, though, I’d just completely undo the whole thing and start from the beginning.

I knew how to knit before I got married, but I never trusted myself to do anythingclipart-knitting-DP2n1R-clipart more complex than a simple hat, knit in the round, just knit, purl, knit, purl. I’m happy to say that out of the twenty-five hats I’ve knit since my wedding day, not a single one is that old favorite of mine. Before the wedding, I avoided new patterns because I avoided counting as much as possible. How could an activity be fun if it involved math?

Liza Spears 062418

Liza Spears – Knitter Extraordinaire

It was that third day of my honeymoon and that brand-new hat pattern that taught me how much I needed to count stitches. I learned that if I was counting stitches, I wasn’t counting other things, like the number of the days my husband had been in the ICU (intensive care unit) or the number of nurses that cried when they saw me. If I focused on the 44 stitches I had to cast on to a pair of size 11 needles, I might not notice that his ICP (intracranial pressure) levels* kept creeping up. The number 44 isn’t so scary when it’s just the number of stitches in a row, but when it’s the number flashing on your husband’s monitor next to “ICP” as one of his nurses ushers you out and three doctors rush in, it is scary.

I wasn’t supposed to have time to knit on my honeymoon. I was supposed to be rappelling down waterfalls in the Azores and soaking in thermal baths, but you can’t do that when you wake up in the middle of your wedding night to the sound of your husband falling down the stairs. Going to the bathroom should be easy. It shouldn’t end with your husband lying in pool of his own blood. The first time you use the phrase “my husband” shouldn’t be when calling 911, and as much as you love your bridesmaid, she isn’t the person you should be sharing your bed with. I wasn’t supposed to spend the third day of my honeymoon in the waiting room of the ICU sobbing with my mom, not understanding why my husband wasn’t awake, and what it meant that his nurse had kicked me out.

In the waiting room, I just focused on the ribbing of the hat. Knit 3. Purl 2. Repeat. I was already switching to larger needles to begin the rest of the hat when my husband’s nurse came out and told me I should say goodnight. The pressures in my husband’s brain were just too high for any extra stimulation, even if I just sat next him counting my knits and purls.

The hospital called me at 4 am the next morning to tell me that they were rushing my husband in for an emergency decompressive craniotomy. They could no longer control the rising pressure in his brain with medication alone, so they removed half of his skull.

I realized I’d have to adjust my hat pattern if it was going to fit my husband’s new head, so I started over, knitting and counting the stitches until he woke up.

*Intracranial pressure levels between 7 and 15 are normal. Levels above 20 are dangerous and indicate brain swelling.

To read more posts by Liza Spears, click on Knit Neutrality.

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

 

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

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(Clip Art compliments of Bing.)

Survivors SPEAK OUT! Geo Gosling

Survivors SPEAK OUT!  Geo Gosling

presented

by

Donna O’Donnell Figurski

 

Geo Gosing 1

Geo Gosling – Brain Injury Survivor

1. What is your name? (last name optional)

Geo Gosling

2. Where do you live? (city and/or state and/or country) Email (optional)

St. Helena, California, USA     goose3@wildblue.net

3. On what date did you have your brain injury? At what age?

In 1995 at the age of 25

4. How did your brain injury occur?

I was riding my bicycle 40-45 mph down a steep hill. (That’s pretty fast on a bicycle.) It was dusk, and I didn’t have a bike-light. A car going in the opposite direction was at the bottom of the hill, didn’t see me, and turned left onto a street. I hit her. In auto accidents, this would be referred to as a “T-bone.” So, while on my bicycle, I “T-boned” a car at about 40 mph.bike

5. When did you (or someone) first realize you had a problem?

Pretty soon thereafter

6. What kind of emergency treatment, if any, did you have?

I was transported by ambulance to Queen of the Valley Hospital in Napa. (It should be noted that my crash occurred only a few hundred feet from the St. Helena Hospital and Health Center, but the ambulance was routed to Napa – about 25 min. south of where I was – because “The Queen” is much better prepared for head trauma.) I had a tracheotomy, and my right shoulder was pretty smashed. I fractured two neck vertebrae, so I had a broken neck. Some ribs were broken also. That all pales in comparison to the TBI (traumatic brain injury), however.

7. Were you in a coma? If so, how long?

I was technically never in a coma, but I was unconscious for either six or eight days – I don’t remember which. (Funny story – I think: I was technically never in a coma because I would respond to outside stimuli. The doctor demonstrated this by talking loud at me or yelling or saying bad things or something, and I would just lie there in bed give him the finger. I just lay there and flipped him off. I later found out the doctors thought this to be rather amusing.)

Geo Gosling 1

Geo Gosling – Brain Injury Survivor

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I had both inpatient and outpatient therapy. Both in- and outpatient therapy consisted of occupational therapy, physical therapy, speech therapy, and “thought” therapy. (I had to see a psychologist because I was rather … ah … depressed. I called it “thought therapy.”) I was in rehab for years. In fact, I still go to massage therapy because my muscles don’t seem to relax too well anymore. Speech therapy helped, but not much because, as a result of my TBI, I have dysarthria, which is basically paralyzed facial muscles. As a result, I have trouble speaking clearly, and I sound a wee-bit tipsy most of the time.

How long were you in rehab?

Years. I still go to massage therapy twice a month.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

Let’s see … where to begin? I’m in constant pain. The part of my brain that is responsible for, or connected to, the gums on the left side of my mouth is injured or damaged or whatever. Anyhow, my brain thinks my gums on the left side of my mouth are telling it that they hurt because something is wrong. Well, something is wrong, but not with my gums. It’s my brain that is confused. My brain “thinks” my gums hurt. So, I just think my gums hurt, but they don’t. (Don’t think about that too long, or you will need to see a shrink.) I don’t like people anymore. I’m pissed off all the time. I haven’t had a date in 20+ years. That could also be why I’m pissed off and don’t like people. I can go from being “happy as a clam” to extremely furious in about ten nanoseconds. (I was never like that before.) My balance is terrible – I fall over very easily. (I couldn’t run to save my life – assuming I wanted to save it. I can’t even walk fast.) I have arthritis in my neck – hurts like hell. My lower back hurts often.

10. How has your life changed? Is it better? Is it worse?

Is this a trick question?

11. What do you miss the most from your pre-brain-injury life?

I miss a career I enjoyed, laughing, hope, feeling good, living, friends.

12. What do you enjoy most in your post-brain-injury life?

Is this another trick question?

13. What do you like least about your brain injury?

Let’s see … where to begin? I dislike my speech. I hate the constant pain. I’m unhappy with having no friends, no job, little money, and no hope. That about covers it.

dT76zBKac14. Has anything helped you to accept your brain injury?

Passage of time, but nothing really helped. I just realized shit happens, and you have to deal with it.

15. Has your injury affected your home life and relationships and, if so, how?

I live alone and always will. I can’t really deal with people anymore. I don’t trust anyone, the reason being that my psychologist lied to me. As a result, I ended up in the mental ward of St. Helena Hospital and Health Center for two nights and three days. I also had a therapist call the police after I had done what SHE SAID I SHOULD DO!

16. Has your social life been altered or changed and, if so, how?

I used to have somewhat of a social life, but now, the only person I do anything with is my mom. That’s a tad depressing.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

I don’t really have one now.

18. What are your plans? What do you expect/hope to be doing ten years from now?

I have no future plans. I will probably be doing the exact same thing ten years from now – nothing.

Geo Gosling 3

Geo Gosling – Brain Injury Survivor

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Just deal with it the best you can.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Do as much stuff for yourself as you can. Doing “everyday living” stuff is the best therapy. If you can walk, walk as much as you can.

Check out these books by Geo Gosling.

 TBI Hell by Geo Gosling 4      TBI Purgatory by Geo Gosling 5

 

 

If you would like to be a part of the SPEAK OUT! project, please go to TBI SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

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